Feeling really bad...How did you react to the diagnosis?

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I mean as the parent.

I am having a hard time with it. My 10 yo was diagnosed with PDD-NOS. Things have been very difficult (and rewarding) for us through his entire life. He has many gifts that over shadowed his deficits, until the past couple years when life literally became unbearable for both of us. He became nearly non-functional because of his symptoms which in turn made me nearly non-functional. He started medication right before his neuropsych testing. The medication has made our quality of life much better. I think if he wasn't on medication during testing, he may (or may not) have a different spectrum diagnosis such as Aspergers.

I logically know things, but emotionally I am a mess. Tons of emotions. I feel dumb. How could I miss it? My son is 10 and flaps when excited. He can't ride a bike. He can't cross the street. He doesn't look people in the eye. He is unable to have a meaningful relationship or conversation. He hasn't let me touch him in years. He only has one interest. He has severe sensory issues.

I started looking for answers when he was 8 yo and it took about 1.5 yrs to get a proper diagnosis. Finding the right docs was the challenge.

The reason I missed it is because of my stereotype of what autism is. I thought autistic kids can't talk. They are zombies with no emotion. That's what I thought. Was I WRONG...

I don't want to go to work. I don't want to play with my younger son. I don't want to listen to other people wants, needs or problems. I just want to be alone. I don't know how to handle this.

I just never expected this diagnosis. I was ready for bipolar, mood disorder, depression, etc...not this.

I know I will eventually finish feeling this way. It's only been a few days since the diagnosis.

Just wondering if you can share some stories about how you felt and dealt with the diagnosis.

As much as we run around looking for answers when things get difficult for our kids, I don't think very many of us are prepared to hear the answers. Long run, diagnosis is a good thing, you've been handed keys, but can your EMOTIONS absorb that? NO. Emotionally, getting that long sought answer FEELS like being hit with a truck, and it's hard to know why; perhaps it is because it's like a chainsaw destroying with complete finality so many dreams, wishes, and visions you had for your child. You know now, for example, with dead certainty that the super-flexible child everyone joked was headed for the Olympics actually has a problem that means he can barely write (my son has the loose joint co-morbid). Or that your highly social child, who seemed to love being everywhere and with everyone, is actually driving people nuts because his actions are inappropriate (hey, it was cute when he was 1!). There are a million ways the world helped us developed false expectations for our kids, and only now do you know with 100% certainty that it was all a myth.

Of course you want to cry.

Give yourself a little time to grieve the loss of the fantasy. If you can't get through it in a reasonable amount of time, talk to your doctor about depression; some of the things you mentioned are warning signs, but ONLY if they go on past a reasonable mourning period.

After that, you get to build new dreams. This time, they will be built on a much more solid foundation, and reflect your knowledge of who your child is. My son has a gift with games, as in creating them; now I dream of him making a small fortune creating the next amazing hit game. OK, lol, still dreaming WAY too big, but parents are allowed that, right? Meanwhile, I pay for expensive tech classes that give him a lot of joy, and know that he is at least developing skills he may be able to sell in some way some day, even if the dream isn't met.

You will move on, and you will be able to enjoy your son.

Give it time.

I was, btw, absolutely SHOCKED to be told it was AS. I had that very social toddler preschooler and toddler I described, above, and he is my cuddle monster; it couldn't possibly fit AS, could it? All these years down the road and I know the diagnosis fits him, but it was and is a scary word, and I like to blame organizations like Autism Speaks for contributing to that (their "awareness" commercials are fright pieces). AS is a SPECTRUM, and the people on it are individuals with a broad range of gifts and burdens. You learn to look for and focus on the gifts, while figuring out how to lessen the burdens. None of it will be easy, but now that you know, you are SO much better off, and you will realize that. Getting the diagnosis was such a giant turning point for my son. We were so close to him just giving up and checking out at school. Once accommodations were in place and he was given the explanation for why he was different, he became so happy in school; practically a 180 within less than a year. Not all kids do the same, but for us it was HUGE. I hope it will be for your family, too.

Last edited by DW_a_mom on 16 Aug 2010, 11:40 am, edited 1 time in total.

My son is 13 and was diagnosed with Aspergers at 9 - for a long time after I was just sort of numb, in a daze and in a lot of pain. It's hard at first - for all the "being different is a good thing, etc" it's really not valued in our society and school started to become awful for my son. We pulled him out and will start our 5th year of homeschooling- it has changed his life and ours.

It is so normal to feel bad -allow yourself some time to do just that.

Then start reading, books, websites, message boards to see that there are things that will help your son and you cope with this. Talking to others that are going through the same thing may be helpful. Life will go on and you will figure out a way to live with the fact that your son is not NT -it's really not the worst thing in the world - sometimes it seems so but it really isn't.

You mentioned that your son "has many gifts" - start looking at those and be grateful for and use them to his advantage.

not this. Gods forbid he should be one of US.

I'm sorry that you're so devastated that your child is broken, damaged, defective or whatever less-than-acceptable adjective you're perceiving him as right now, but please do not communicate this disappointment to him. He's going to spend his entire life being treated as a freak by his peer group, shunned, picked on and generally viewed askance as an oddball - try not to add to that by letting him know you think he's DIFFERENT, too. He's going to get more than enough of that from the world as he tries repeatedly to be one of the gang and almost always misses the mark.

If you treat him as though he's perfectly okay the way he is, he'll no doubt go through periods of depression at his awkwardness and estrangement from the crowd, but eventually come to accept his unique qualities as a positive, a distinction rather than a flaw.

Concentrate on identifying his strengths and aptitudes and encouraging and developing those, because its those things that will allow him to function and survive in RL.

"Train up a child in the way he should go: and when he is old, he will [happily remain in] it." (Proverbs 22:6)

Many people wrongly believe the above is about sectarian religious instruction.

Raise and nurture your child in a way compatible with his or her own personal bent and s/he will not later altogether despair of life.

I burst into tears when they told me. Tears of relief. I had been asking for help for my daughter for 16 years and finally someone had acknowledged the struggle we had been through. Then I got really angry at all the people who had dismissed my concerns over the years and put it down to bad parenting. I wanted to go and slap them with the diagnosis.

It was very hard for me. I knew something was different but I was not at all prepared for the "autism" word. It really threw me into a depression for a while. And then I doubted the diagnosis altogether. I went back to the Univ Health Science Center and questioned it. After that, I did as the pps mentioned and read everything and learned it wasn't as horrible as I thought. Of all the things it could be-to me, AS is not the worst.

Now it is hard in a different way. Some things I realize can't be changed (disciplined, conditioned, etc) and that is overwhelming at times for me. I am at a loss on who to ask for help so much of the time. I feel like I am wandering a dark hallway with my daughter, knocking on every door and those that might open just say "sorry we don't know how to help you".

So many of the things my daughter does are very alarming to me and I don't know what to do. But that is another post.

BTW, DW, your post is the first I've heard of loose joints. My daughter pops her joints off and on like it's a game. It is quite alarming to those who see it. Is this "loose joints"? Should I be addressing it in some way?

Hello-first of all you have every right to be feeling the way you are---You will need to give yourself time to grieve. Try to find some time when you can be alone to just cry and let it all out. I agree with Willard, try not to let your son know of your feelings. He needs all of the support in the world from a parent that is strong and able to help him face his difficulties. I am sure it is not "him" that you are disappointed in as much as it is that you are worried and afraid for his future. I don't know, but that is how I felt. My son was only 2.5 when diagnosed, and there had been talk of autism from the time he was about 17 or 18 mos, so I guess in some ways I had time to slowly prepare myself. But, it was still hard knowing that yes, for sure, he has autism. More than anything, the emotion that I had was fear. I was afraid that he would never have a relationship with me, that he would not even really know that I was his mom, that I would never hear him say "I love you", afraid that he would never have a friend, afraid that he would have to go live in a group home where he would be abused, afraid that he would be bullied at school (if he could even go to school)

I never really had a vision in my mind of what my child would be like. I just didn't want him to have to face all of these difficulties in life.

It has been over 2 yrs since the diagnosis, and my son is 5 now. With school, therapy, and lots of patience and love, my son is progressing fine. Most of the fears that I have are now slowly peeling away as I read and educate myself on ASD. Reading has been my therapy. I just kept reading and reading every book that I could get my hands on so that I could learn as much as I could about my son and learn how to relate to him and to help him function in the world. My son does know that I am his mom and he even says "I love you, Mom" He is learning, it may take him longer than the average child, but he is able to learn.

I am not going to lie and say that it is going to be smooth sailing, but now that you know for sure what is going on, then you will be able to move forward. You will have ups and downs. I have really good days, and then days where I still feel sad, not because my son has autism, but I just feel sad when I know that he doesn't have any friends. But, from what I have read, maybe it doesn't bother him. So, it is what it is.

The other piece of advice I can give is to keep in mind, that you will have to take care of yourself and make sure that you are sane before you can give your son the attention he needs. One therapist told me that if the parent loses it, then the child doesn't stand a chance---that made sense to me. If you are not feeling stronger and able to cope in a reasonable amount of time, then you may want to see a counselor for yourself. Not sure what your religious beliefs are, but my faith in God has been what has gotten me through this.

Hang in there, and keep coming here to get support as much as you need. And know that you are not alone

Wishing the best for you and your family!

I think the official term is hypomobility, and many AS have it. You may or may not ever hear the term, and it may or may not be an issue for your child. I think it is more common to throw out disgraphia or other related concepts, but it all comes down to a simple observation: your child physically has trouble with normal functions like writing, while having some unusual abilities. Your daughter is still really young, if I recall, so none of it may have come up, yet. Even with years of OT I hadn't heard it put that clearly until a member here was describing it to me. Although ... maybe it just slipped in and out of my mind the first time or two. I've been known to do that

There isn't really anything you can do about it. One of those things that just, "is." They will most likely work on muscle tone in the fingers and hands, etc., and the member who told me about it uses braces on her fingers (my son wasn't interested). That same member told me it can cause some health issues, but more immediately the things you would want to know are that it will make learning to write literally painful, and that it also causes the child to need to move excessively and touch excessively. As the OT explained the last part, when the joints are loose there are also gaps in the bodies sensory information highway, so that many nerve signals get lost on their way to brain. As a result, the child will seek more tactile input, just to have a sense of where they are in the air space around them; to feel anchored. I haven't found the professionals to be too excited about it; they are more interested in dealing with what we all can see, like a problem writing. I guess that is because there is no treatment; it's just a reason behind other things for which there either are protocols, or that aren't of concern to the school et al.

Ah, ok. My daughter has this. It was diagnosed as Developmental Coordination Disorder. I thought the fact that she can pop her joints on and off was significant. She can pop her knees and shoulders in and out of joint and also her wrists pop sometimes. She does have difficulty with handwriting but I didn't know if it was all "related". What kind of unusual abilities can come from it?

My son can write pretty much as well as normal with his thumb tied away, he can put his foot behind his head, and he can do a center split without much stretching. That sort of thing. Party tricks, really

I was told for over a year that he was likely bipolar and OCD. I spent all my time and effort researching those disorders and came to accept that my son probably had these disorders. I was prepared to hear these diagnosis. It never occured to me that my son could have ASD. I wan't prepared and it was shocking because I had already struggled for so long to wrap my brain around other diagnosis and not considered another. It was very hard for me to accept BP or OCD, so now I am going through the exact same thing again - trying to accept something new that I never expected.

I also feel very angry that for a year docs were telling me that my son is probably bipolar and OCD. Very angry that they wasted my time and energy moving in that direction. I actually was relieved that my son is on the spectrum rather than bipolar. To me, on the spectrum is much more manageable than bipolar. Plus, there is less stigma and controversy over ASD than bipolar, much more research, much more acceptance. See, I can see things logically, but my emotions just don't see the logic.

There are worse things to be, than on the spectrum, and I hope that you feel better, soon.

Logically I am relieved and happy that my son is on the spectrum, that his meds are working, that he can get proper treatment to make him happy. I am having trouble with a lot, but it is not because I think it is so terrible to be on the spectrum.

It is mostly that I never considered it. I missed it. He could have been in treatment 9 years ago. I yelled at him for things he had no control over. I thought he was being stubborn and a pain in the butt when he really couldn't do stuff. I forced him to do things. I had the traditional hard nosed parenting for the past 10 years. I obviously eventually figured out it wasn't working and that there was actually something different. I failed him.

That is where the anger and sadness is coming from. I F'd up. I missed it. My child has been going through this and I have probably been making it worse. I am so angry about that.

It is not that he will never do this or that. I never had any expectations of what he would do or be. I am the type that said if my son is truly happy pumping gas and doesn't want more, then I would be happy with that. If my child is a good person, that is enough for me. I have always felt that way.

But that's just it - I want him to be happy. He has NOT been happy and it is my fault. Because I didn't seek treatment sooner. Because I listened to the stupid advice of my friends, parents and doctors about parenting and discipline rather than to my gut.

I hope that you will be able to come to a point of not blaming yourself. Yes, maybe he could have gotten help sooner, but you have been addressing it the best way that you knew how. Now it is time to just take it all in and move ahead. Holding on to the guilt is not going to help your son.

Sometimes it is really hard to know what is going on, especially since many little boys have odd behaviors when they are young. It may have taken a while longer to sort out, but at least you are there now. You will begin to put things in perspective after the shock wears off.